All the Study Subjects Have Gone to Prison

The criminal justice system is sabotaging longitudinal clinical medical studies. At some point in the years-long research process, prisons begin plucking black male subjects away, making it impossible for scientists to do any follow-up on their well-being.

Currently, federal regulations limit the participation of the incarcerated in medical research. It's a vestigial restriction from 1978 meant to curb "decades of unethical research in correctional institutions."

Long-term studies often shed subjects due to lack of follow-up, but Yale University School of Medicine researchers recently vetted the enrollment numbers of 14 major National Heart, Lung, and Blood Institute studies (with more than 72,000 participants) and found that "high rates of incarceration of black men may have accounted for up to 65 percent of the loss to follow-up among black men in these studies."

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Their study, published in Health Affairs, suggests that the disproportionate incarceration of black men is eviscerating the statistical validity of the results, which, in many cases, are used to gauge health disparities among the black community.

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If a significant proportion of black male participants are lost to follow-up, much of the necessary statistical power is lost for that group. For instance, in a [Coronary Artery Risk Development in Young Adults] study exploring the association between hostility and coronary artery calcification at year fifteen, researchers were unable to explore race-specific analyses because of statistical power issues. In addition, the disproportionate loss to follow-up of black male participants raises concerns about the precision of researchers’ estimates. If data are not missing completely at random, results may be biased.

The likely high association between imprisonment and being lost to follow-up in these studies may yield underpowered and biased estimates for black men. Furthermore, participants who are incarcerated are more likely to be sick than are participants who have never been incarcerated. This difference increases the likelihood that disease rates and progression of disease in blacks and black-white disparities will be under-estimated.

So, to review, researchers hoping to get a better sense of health disparities are being confounded by a criminal justice disparity, which, in turn, produces an informational disparity. This kind of cascading effect is structural inequality rendered in full relief.

The scientists suggest changing federal research rules to provide easier access to subjects who start out as free men and then are imprisoned as the study progresses. "The loosening of this regulation would permit studies, including those in our analyses, to follow participants into correctional facilities without first obtaining approval from the Office of Human Research Protections," the researchers write.